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Sarah Boyle was desperate to find help for her young daughter Elka who was born at 25 weeks, weighing just 486g, and had a feeding tube from birth.
Desperate to find help for this complex and highly stressful condition, Sarah found help through Mater Children’s Private Brisbane where a team of specialists helped Elka become tube free with follow-up provided by Mater Health and Wellness paediatric feeding team.
As an extreme premature baby Elka required a nasal gastric tube as part of her feeding routine explains Sarah.
“The tube was used to top her up after breastfeeds when we were in the Special Care Nursery and we were discharged home with this feeding plan. However three months after we were discharged Elka lost her ability to breastfeed and became totally dependent on the feeding tube.”
After seeking medical advice, Sarah was advised Elka could not be weaned off the tube until at least 12months old when she could get all her nutrition through solids. However, Elka had lost all ability to recognise hunger cues, was not demonstrating any progress with acceptance of solids and was vomiting frequently.
“It was stressful and heartbreaking for us as a family and uncomfortable for Elka. It had a significant impact on our quality of life,” said Sarah.
With Elka’s first birthday approaching Sarah decided to search for answers and help for her little girl. Mater Children’s Private Hospital was able to provide Sarah with the help and support she needed.
“It all moved so quickly we had our initial appointment on Thursday and a plan was made to be admitted on the following Monday to begin the two week tube wean.”
Sarah recounts the tube wean itself as a time of uncertainty, there were no guarantees that Elka would respond to the treatment and that her hunger cues would return. After nearly a week in hospital and no improvement in her feeding skills Sarah was ready to give up and go home.
“It was such difficult time and I was close to breaking point but the support and reassurance I was given by the team pulled me through and we stuck to the plan to see out the two weeks.”
“Finally on day eight we had the breakthrough we were looking for and Elka guzzled a 50ml bottle and I burst into tears,” said Sarah.
Elka’s feeding skill continued to progress and make great improvement to the point that she was completely weaned of both her nasal gastric tube and oxygen by the time of her discharge.
“The team were amazing, providing support and reassuring us that everything we were going through was part of the process especially through the highly stressful times. The ward itself was ideal, the rooms were comfortable and the staff so friendly,” said Sarah.
Elka is now tube free and thriving, constantly reaching out for food and actively engaging in meal times. Overall Sarah has seen her motor skill development progress and her happy little personality has been able to shine.
“Overall the care we received was exceptional and we are so thankful for the continued support of outpatient team. We have come so far and have full trust in the team to support Elka’s continued progress,” said Sarah.
Since her stay at Mater Children’s Private Brisbane, Elka has celebrated her first birthday and even experienced her first swim at the beach.
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